Gokwe parents whose child was diagnosed with myelomeningocele seek assistance

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Perseverance Javangwe

Leonard Zhakata in one of his songs, ‘Tinevimbo’ says, “Vose vamunoona vachingomberereka zviri mupfungwa dzavo zvakakomba. Deno maivabvunza maizodudzirwa kuti simba revimbo rakakosha.” (All those wandering people have their own burdens. If you quiz them, you will reveal the strength of hope).

These words came to my mind when I witnessed the struggles being faced by the Nhigo family from Nyaradza in Gokwe whose child was diagnosed and operated on, for myelomeningocele a year ago. What the family faces is evident of the cruelty that now exists within our society, where people discriminate against others prompting the late Oliver Mutukudzi to pose the question, “Ko tsika dzedu dzakaendepi ko, ko hunhu hwedu hwakaendepi? (How have we lost our manners?)

Myelomeningocele is a congenital defect of the central nervous system in which a sac containing part of the spinal cord and its meninges protrude through a gap in the vertebral column; frequently accompanied by hydrocephalus and mental retardation.

Discrimination against such families with a child different from others have become rampant in the society that we now live in, and for Nhigo, yes, it is tough to move around with the child because people say all sots of things but she has learned to accept the situation and move on.

“In society, it is normal that people will laugh at you, what else can they do? Even sometimes if I walk around, the way people stare at the child while I am carrying him makes me feel out of place and it will be difficult for me to move. Some say many bad things. So oftentimes I see it fit to just stay at home because some will discriminate and I have accepted that. Some will come to check at us in a good way and we are grateful to them,” she said.

According to Mrs Nhigo her son, Francis Nhigo Junior was diagnosed with myelomeningocele during the lockdown last year, and to get him for the operation was a challenge that she and her husband had to endure through. She explained to this reporter the struggles that she and her husband went through after the birth of their child.

“This child was born on 25 January 2021 with a lump at his back at Murambinda Hospital. Then when he was born, it was during the covid-19 (coronavirus) lockdown so he was discharged and we were instructed to for check-ups at local clinics. But while I was still in the hospital I enquired from people around about this challenge and some instructed me to go to Harare Hospital before I return home citing that myelomeningocele should be repaired sooner. So I rushed to Harare and they could not operate him due to the covid-19 situation and instructed me to return after covid-19 has seized. But what they were saying, the after-effects of the situation did not allow me to just relax with the child doing nothing. I then visited a private doctor and they charged me US$4000 cash. The doctor said we had to pay 95% of the amount to finish the whole operation.

“We tried to dig for money and failed to result in us returning back home. But the child became sick while vomiting and there was a need for an operation sooner. We rushed to the rural areas and we sold all our cows to raise funds and we also borrowed from relatives and friends. We even tried the social welfare department but they said for an emergency the amount was too much and they could not help us. So we borrowed until we raised the sufficient amount and the child was operated on, on 23 February 2021. After the operation, I came back home but I was instructed to frequently measure the circumference of his head to make sure that the head does not grow bigger because the doctor said there was a 20% chance that the child’s head could grow bigger,” she said.

Research has shown that children suffering from Myelomeningocele can develop mobility issues, bladder or bowel incontinence, and hydrocephalus, a build-up of fluid in the ventricles within the brain, which often requires a shunt to drain the fluid.  As time went by, Francis’ head grew bigger resulting in the mother opting to return back to the doctors but the situation was tough because it required more money which forced Nhigo to borrow from relatives again.

 

“So when I came back home, after a month I measured the head and realised it had grown bigger from 40cm to 45cm. the day I realised it was the same day that I was supposed to go back for a review to check if he had healed. So when I returned for the review and I told the doctor that the head had grown by a large margin. They asked for money to enable Francis to undergo a scan because they felt there was a need for a second operation and I informed the doctor that I had no money. I then called the father and informed him about the situation and that the CT scan was charged at US$175. So my husband went to the rural areas to borrow some cows from our father so that we could sell and raise the funds

“Added to that amount we still had a backlog amount towards the doctors, but they allowed us to pay for the CT scan so that they could drain the fluids that were in Francis’ head. So we sold the cow and paid the needed amount, the scan was done and it confirmed that the fluids were too much in his head. The doctors then said that there was a need to install a VP-shunt in his body. I spent the whole week in the hospital while he was being operated and they managed to place the shunt in him. This is the one draining the fluids from the head and he now lives with it,” she explained.

She also pleaded with well-wishers to assist her in acquiring a chair that is specifically meant for people like her child. Due to the arrears that she owes to relatives and friends it has become difficult to purchase the chair as she is now prioritising the little money they get in clearing arrears.

“The problem he has now is that he does not have power from the waist to the legs. He cannot seat alone, and there is nothing I can do in life besides seating with him. Because if I leave him seated alone he will try to make movements since he is growing up but he will fall down, so I have to seat with him always to enable him to play well. According to the doctors, there is a special chair that is made for people like him. But because we owe a lot of people, it is difficult for us to purchase it. At the moment if we manage to get say, US$100 we try to pay back anyone we owe. If we still had cows we would sell and payback but unfortunately, we sold everything we had. So I wish to get that kind of chair but cannot afford, oftentimes I use a dish so that he can sit inside because he likes to move around, but this is a challenge.

“Now we have managed to clear all the arrears to the doctors but now we owe a lot of people whom we borrowed from friends and relatives. Our grandparents gave us two cows and said that they were ours but they added us another two which we should payback. These ones we sold them at US$300 and US$250 respectively and we are supposed to payback. We have our cousin in Harare whom we owe US$500. We also have our aunt whom we owe US$350. So far that is what we owe and we have tried to pay back but we still have a long way in finishing all our arrears. So far the child has not faced any problems but as a person living with a shunt in his body, we do not know if something might come up. “For those who are willing to assist us, contact us on +263 778 219 572 or +263 775 037 214. Our address is 657 Nyaradza, Gokwe, Zimbabwe,” she said.

Francis Nhigo Snr unlike other fathers who run away from similar situations leaving women to bear the brunt of caring for such a child stood firm and accepted the situation while supporting his wife so that they can raise him well together.

“Some things you just ask yourself that, to whom was it supposed to happen? Due to my nature of work we move around in different places meeting different people with similar circumstances, so this has taught me that when such situations happen you have to accept it and move on,” he said.

Gokwe Mayor who spoke with this publication called upon well-wishers to step forward and assist the Nhigo family with their child so that he can grow to become a better child just like others in the society.

“When we first came across this challenge, I came here and got the whole information resulting in us forming a group for social media for this ward and others to seek assistance. People have responded well and some have come to donate in any way they can. So we want to keep encouraging everyone to do their best in helping out this family anytime they can come. Anyone is welcome to come forward and help so that the child can grow well just like other children,” he said.

For all babies born with myelomeningocele, the prognosis is poor. In underdeveloped countries, congenital anomalies, especially myelomeningocele, account for nearly 50% of infant deaths, and the rate is inversely correlated with the per capita gross domestic product


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